Archive for the ‘gratitude’ Category

So, another three months has passed by, I’m still alive, and got to go to Hickman Cancer Center today for my transfusion of good drugs. Zometa…or as I kinda like to think of it now, as “Zippity-do-dah Zometa”.

Two years and 10 months out from BC diagnosis, and I’m doing pretty damn good. Lucky me….discovered icky cancer, had good insurance, lots of accumulated sick leave (well…not anymore…) and signed up for the most aggressive treatment options possible, including the Zometa clinical trial. At the time, I had absolutely no reservations about signing on for the trial. And no, it wasn’t about being nice (ha! fooled you!) or advancing research (nice idea, just not why I signed on) but if I’m completely honest about it, I was mostly interested in staying closely connected to an oncologist. I didn’t care what the excuse is/was , as long as I got to sign up for an onco appointment every three months, I was happy.

Oh sure, I read everything and talked to everyone about Zometa, and mostly all the medical people nodded in agreement, “probably worth a try”. And honestly, I was, and still am, willing to do anything to prevent recurrence. And lucky, lucky me…..turns out Zometa maybe really is one of the good cancer fighting drugs.

Last month (12/2011) researchers published results that indicated Zometa was not only helpful in strengthening bones from the damage that cancer treatment inflicts, but also seems to protect against recurrence, as well.

“The benefit persists” long after treatment ends, said Dr. Michael Gnant of Austria’s Medical University of Vienna, who presented his research last week at the San Antonio Breast Cancer Symposium.

Gnant’s study showed women who received the bone drug Zometa were 37 percent less likely to die than women who didn’t. That means that 4 to 5 more women with breast cancer out of every 100 were alive seven years later because of the treatment.

Some cancer specialists are now calling for Zometa to be offered to all patients like those in this study – younger women forced into early menopause by hormone-blocking cancer treatments.

“It’s a new standard of care,” said Dr. James Ingle, a Mayo Clinic breast specialist.

I can’t take credit for this writing, this is something Mr. Kurtz sent to all the faculty at Penta several years ago. I love this. This is how I have always lived my life, from striking out on my own at 16, to living in California in my 20’s, and finally settling down after I turned 30.

Being so optimistic also made it difficult to process and accept the cancer diagnosis, but once I decided to turn it into something that would serve a greater good, to be a teachable moment, my perspective changed. Of course, this is one of the main reasons for this blog.

incredible. This entry is inspired by one of the images that Bill Jordan captured last Thursday.

This is Suzi, and was taken “pre-op”. The funny thing is, I don’t remember this moment. She is such an experienced nurse, knew my meds had begun to take effect and it was highly likely that I wouldn’t remember anything at this point. But look at her smiling eyes, her hands giving me a “hug”.

I am so grateful for the many great nurses I have met on this cancer trip. They have given me the opportunity to share my worries, and then gently diminish them. I love the fact that I can email my oncology nurses with questions about test results, and get a message back the same day. My radiation nurse one day called me back at the end of a visit to have another look at the burns, and provided a different method of dealing with desolate and destroyed skin, because she didn’t want me to experience any anxiety over the weekend.

and I’m still here and happy to say I can laugh out loud again. This is not to say that I haven’t had a good time in the last week, but because of the “delay” surgery, laughing was……well, difficult. On thursday, the day of the surgery, I came home feeling pretty damn good, because they give you great drugs when they knock you out for surgery. By Friday, well, that was another story. I felt real “ouchy”, as in every time I moved or laughed or coughed or sat down or sat up I would go, “ow ow ow ow ow” both from the incision and the muscle layers that had been disturbed in the procedure. Not that it was terrible pain, it was just damned uncomfortable. BUT, I took my main pain meds for only two days and by Sunday I felt decent enough to drive myself to church and stay for the potluck with the Unitarians. Today, Tuesday, I can say that I feel much, much better.

Since I last posted I’ve been back to Dr. Barone, and the official report is that I have great anatomy and am a “good healer”. By the way, I asked about why this surgery, the snipping of the lower epigastric artery in preparation for the TRANS (Transverse Rectus Abdominis Myocutaneous flap ) is called the delay procedure and received this unimpressive definition: “delay” refers to performing the rest of the surgical operation at a later point in time. Thought it might be more clinical than that, but no.. Apparently delay procedures increase the likelihood that the following surgery will be more succesful, due to the subsequent bulking up of the superior epigastric artery, which is the primary initial blood source for the whole muscle and fat flap that is to become my new left breast.

my new left breast. In a way, it will kind of be like going to the hospital to have a baby. You don’t exactly know what to expect, except that it will surely hurt, and you hope that the prize will be worth it all. Kind feel like I should be thinking of a name for her.

such as the hair in our eyebrows. This was the hair area that was the last to leave, and is now, 11 weeks after the last chemo, finally coming back in with gusto! These past few months I tried to ignore the fact that I missed the little buggars….just penciled ’em in, and tried not to look at a mirror all day. But now…..now I spend more time than I’d like to admit inches away from the mirror marveling at just how many hairs go into making an eyebrow. Did you know that the average human eyebrow has about 500 hairs? And I’m pretty sure I lost about 450 of them per brow, but the follicles are no longer inhibited by the chemo meds, cells are reproducing like crazy now, and I am absolutely delighted about this! I never realized how much I LOVE my eyebrows!

And the hair on your head….well, let me just tell you, head hair is more than just for “pretty”. It’s dang cold without any hair in November in Ohio! Sometimes I get kind of tired wearing the hats, but there is no option….especially in an old house like ours, it is too expensive to heat toasty-warm all the time, so I walk around with hoodies and hats now that Fall has taken firm hold of Northwest Ohio and is not letting go.

But, my hair IS coming back in! This image was taken a little more than two months after my last chemotherapy infusion.

November 2009

And for those of you that know me….what do you think of the new hairdo? Quite a departure from the original, isn’t it? I assume that it will get curly as it gets longer, whatddya think? And who knew I had so much silver hair? So now the question is….do I keep it au naturel? I have become accustomed to the simplicity of not having hair. And actually, I have found it suits me, the 5 second “style” is really convenient.

Unfortunately, without a massive mess of curly hair to distract the eye….all the lines and crows feet are way more apparent now. Yea, that’s kind of a problem. But, one I guess I’ll just have to ignore. Whether I like it or not I think I earned all those age lines, given what I’ve been through this year. And really, I am grateful to be alive. And I’m grateful to be feeling better, even though it is usually only for a half day at a time. Cancer really changes your perspective on everything.

Well, yesterday, the 28th and final day of radiation was no fun thing. I knew that getting into “the postion” would be painful, and of course it was. I’m not usually a crybaby, but involuntary tears rolled down my cheeks as soon as my radiators scurried out of the big room with thick walls. Thank God for the Dali Lama! The chanting CD became incredibly important in this little radiation adventure. Something about it enabled me to pretty quickly drop off the edge of conscious thought and into some kind of “zone” that I can’t really explain very well. All I know, is that as soon as I surrender completely to the chanting vibrations, the clicking and hum of the great big radiation machine disappears completely. It’s as if everything disappears and I drop into some light level of unconsciousness…… That’s a great gift when you get radiated for 20 minutes every day.

Except that “radiated everyday” is in my past now. Something about the physical pain of this week combined with the emotions of knowing that daily physical treatment came to an end wrapped me in a big insecurity blanket and made me, normally the level-headed one, feel completely emotionally raw and exposed. It was a wierd mix of happiness and fear. Fear in the lighter sense for my physical self. My chest is supremely uncomfortable. My fabulous oncology nurse called me back at the last minute to put some special treatment dressings on my burns, and now, 10 hours later, I am kind of “OK”. My great radiation oncologist, Dr. Rubin, encouraged me to take the pain meds he prescribed, saying, “In the US we don’t medicate cancer patients enough”. So right now, sitting up in the middle of the night in my bed, I feel not great, but OK, and I’ll take that as a gift.

Emotionally, I don’t know where I am. I feel insecure. Dr. R told me on wednesday that I have a great prognosis with better than 80% chance of survival. Just that 80% doesn’t sound good enough to me. And I am fearful about my follow-up care. I don’t know why. I still have a bunch of medical appointments on my planner for the rest of November and a few into December, but at this time, I’m still not clear about exactly how we manage the next year…….. And all the while I struggle with the pain and the insecurities, I know that I am lucky to be doing “so well” and feel a little guilty being so wrapped up in this self centered examination of the details of cancer.

As awful as my radiation experience was, it was made bearable by the professional people at Flower Hospital who cared for me and about me. From the moment I walk through the door, the medical receptionists know my name and check me in like a VIP. I can’t say enough good things about my Radiation Technicians on C machine. Thanks for allowing me the time to cry on your shoulder, and for coming in on your day off (with your special surprise!!) to see me on my last day. Both were moments I won’t forget. I just love the onco-nurses, especially Pat. Thanks for listening to me. And quirky Dr. R……I do have great respect and admiration for his manner and knowledge. Lucky me to have experienced all of these compassionate and intelligent people.

So today I got to see Dr. R, Leader of the Radiators. Did our usual, visit for a bit, then business for a bit. “Business” is his short list of “boring” questions which I mostly answer right, and today we ended with the skin issue. Each time I get off the slab in the big white room of “machine C” I am noticeably a bit more….um……only one way to say it………burned. Damn. This is just sucking the life out of me by 12 square inches of what used to be my chest, now a sunken, scarred, wasteland. (Remind me again why I am doing this.) Now I noticed that it hurts to actually turn around and look behind me when backing up in my car. And a bra…oh forget it. Normally I would not care a bit, BUT for the fact that I teach Junior High School. It is kind of a job requirement. If you want anyone to actually listen to anything you say, you need to have some semblance to normalcy….and that means a balanced frontside. Tried putting the “puff” in a shelf bra camisole the last few days, but now, even that is UNcomfortable. My lovely WalMart lingerie is now obsolete. Like REALLY. I have no idea what I am going to do tomorrow for a wardrobe in flux.

So Dr. R looked at my chest and provided me with a product that he kept emphasizing is French and called Biofine which is supposed to help the radiation burn. Well, it’s been a few hours and so far…..no pain relief. Still really uncomfortable. Maybe it isn’t supposed to make you feel better. I guess this is the payoff I get for leading a pain free life up to this point in time…….a little radiation and I am consumed by the discomfort. That is when I am not consumed by the fatigue. I am so sick of being so tired. Have never experienced this in my life. At least during the summer ‘o chemo, I had good days mixed in with the bad. This is just one big long fatigue festival…………and it is really wearing me thin.

Bisphosphonates Newsflash

After the hospital and before complete exhaustion I got a call from Nurse C, Clinical Study Recruiter. I’d just been randomized! Did I want to know which arm I received??? Well, since both have significant drawbacks I thought it didn’t matter much…..until I was told I received the IV method of delivery of the meds. Needles don’t bother me, but I am curious how long it will take to have this infusion every month. Will I need to take a day off each time? Geez, I hope not. Forgot to ask that question. Sure hope that nasty ‘ol osteonecrosis of the jaw doesn’t enter my reality (the most severe side effect). Yuck. Gee maybe it does matter to me which arm of the study I receive. Don’t hesitate to remind me that I am doing this to (potentially) prevent a metastasis of cancer to the bones….which NP Joan from U of M reminded me is far more life threatening than jawbone problems. So, it is just another learning opportunity for me.

Good News

Things I am thankful for:

colleagues who set warm coffecake on my desk before I get to work

and colleagues who bring me yummy lunch

old friends who leave sweet little notes on my car

great funny emails, sincere emails, “love you” emails

Dali Lama chanting CD that fits really well with the hum of radiation (no, really! Even the radiators like it!)

Cookbooks for a cancer girl

a boss who cares

the delivery of red wine, “because it is supposed to help with radiation burn” (maybe I’m not drinking enough, I hadn’t thought of that!)

So today will be my tenth date with the linear accelerator. Eighteen to go. Wierd as it sounds, everyday I look forward to radiation. I have to believe that it is a special time for me, one that I’ll never have again, laying on the “Linex”. Decided last week that I should get dressed up everyday for radiation. That’s not really so hard since I go straight from work to Flower Hospital, but I make sure I have coordinating jewelry (and hat too, as it is getting cold for my bare naked head in Ohio). I have worked on perfecting my “radiating aire” as I swoosh down the labyrinth of curving halls back to the more personal ladies radiation waiting room. Even made my own “hospital gown” with bedazzled jewels on it. I couldn’t stand the hospital gown and bathrobe! I mean really. I really, really hated it with a passion!!

All this overt sweetness and charm on my part is one way to overcome the impersonal nature of “radiation”. A good description of my experience is: ” The beam comes out of a part of the accelerator called a gantry, which rotates around the patient. The patient lies on a moveable treatment couch and lasers are used to make sure the patient is in the proper position. Radiation can be delivered to the tumor from any angle by rotating the gantry and moving the treatment couch.”** Couch! Ha! That’s a good one! Anyone who has ever been there will get a laugh out of that! The surface you lay on is anything but a couch. But the rotating gantry and movable surface is right on target.

During my first couple of treatments I was obsessed with watching the gantry move and counting the seconds of radiation until I lost count. Then eventually I decided that was a waste of time. Since I was obligated to be there for about 25 minutes a day, I thought I should be more productive. Now I am working on dropping off the edge of consciousness as quickly as possible after my radiators (my affectionate pet name for Natalie and Donna, the technicians who take care of me) get me into the exact position and turn on the music ….. And speaking of music, I can now bring in my own CD! I have some harp music from the U of M music therapy program, but I am open to any suggestions anyone might send my way for the remaining sessions I will have.

The amazing thing is, it seems like just a few minutes later they are coming in to help me up. That energy work and reiki this past summer has paid off. Thanks, Tom and Veronica. The Yoga Nidra didn’t hurt either.

Well, I made it to the infusion room, and got incredibly lucky to get the private room again! The premeds went in with no problem, and Taxotere was next, again NO PROBLEMS! It is now 6:45 pm and the Cytoxin is about halfway done, and I’ll be soon leaving Infusion Center B1 for the last time. I love U of M, the nurses are all exceptionally skilled, today Julie is my infusion nurse, and she is great. As much affection as I have for the people here, I really hope to never, ever have to come back here again. I am grateful for the people who make the treatment of this disease their lifes’ work, but cancer still sucks.

Last night Lou and I saw the movie Julie and Julia. It was great, especially Meryl Streep’s portrayal of Julia Child. Wow! WOW!WOW!!! And all the food………..ohhh my goodness. I loved it, loved it, loved it!! When I woke up this morning, I couldn’t stop thinking about the food. And then I realized just how much, how terribly much I miss “the food”. I think one of the things I have missed the most this summer is not being able to COOK. Oh, I can kinda’ cook. I can make a basic dinner with convenience foods and a few fresh ingredients. I have enough stamina to make it through the grocery store, and get the food into the house. I have enough strength now to be able to get the Caphalon pans off the rack and onto the stove. But I have discovered, I must keep it all very simple, or else I run out of steam before the dish is done. I can’t even tell you how many beautiful bunches of basil have been denied the opportunity to become a perfect pesto because they wilted into oblivion in my fridge before I had the opportunity and energy to put the simple recipe together. And the swiss chard, especially the rainbow chard…sighhhh…I just felt so so bad, and so sad to throw several bunches out over the last couple months. Beautiful rainbow chard gone to waste is a terrible thing. I have started with great intentions, and think a recipe through carefully, plan around what I anticipate will be “my good days” purchase the ingredients ahead of time, and somehow it frequently hasn’t happened, but certainly not for lack of desire or will.

I also miss strength and stamina. Just pulling four dinner plates out of the cupboard takes effort. Actually I can’t even do that, it’s more like two at a time, and even that is not all that easy. Closing the back door of the minivan…that hurts, too. Even pulling weeds out of the garden requires planning, have to save that for the “good days” and all I can manage to evict then are the shallow rooted invaders. This lack of upper body strength makes me feel so oldwhen I have never felt old before. I am working really hard to continually, everyday, try to do a little more, but it seems like I take two steps forward, and then one, and sometimes two steps backwards. The lymphadema issue on my left side, that is a real thing. So, I guess I really miss those lymph nodes, too. All these years I have taken them for granted….well no more. I’m grateful for all the lymph nodes I still have left. You should love your lymph nodes and appreciate them for all they do.

I miss fearlessness. I didn’t realize until this year, how relatively fearless I have lived life. In fact, I don’t think I really experienced much fear until I had babies. When I had babies, they came with “parent fear”…if you are a parent you know what I am talking about….the fear that something, someone, some unknown factor will hurt your beautiful and perfect child. Of course, “parent fear” comes and goes with the news stories of the day or the shriek of a child….. But now….geez…cancer……somehow it invites itself into your tissues and divides uncontrollably. Then, if you are lucky like me, you find it before it reallythreatens to kill youand get it in a body part that is non-essential (sorry about that breasts), and a good surgeon can “cut it out”. But you know what they can’t cut out? That nagging fear that some how, some rouge cancer cell snuck out of the core tumor and has been hiding from the chemotherapy, is out of the line of fire of radiation, and just waiting to make a ‘comeback”. The small discomforts of normal aging now make you think with a paranoid edge. Could that nagging backache be something bad happening in my bone marrow? How many times have I had that little pain in my head….and has it been in the same spot….and maybe I should mark it with a “Sharpie’ so I can keep track of it…maybe I should make a log of the times I’ve felt it….. I don’t know how to find the balance between merely paying attention to my body and being paranoid about every little thing, little pains I feel. I don’t like it much, being paranoid.

Yesterday I made a trip to Office Max to buy one of those rolling cart things for when I do eventually return to school (hopefully by the mid to end of September) because, of course, I’ll probably not be able to actually carry stuff back and forth like before. While in the cashier line, I saw this pretty teenage girl, I kind of didn’t recognize her at first…and realized it was Emily, a quiet and thoughtful student I had in my class for two years in a row. Boy, over the summer she has grown, looks more mature. I chatted with her and her mother for a few minutes as we all walked to our cars. I put my bags in my car, got in, and surprisingly and uncontrollably burst into tears. Wow…what was that all about? I think I just miss teaching, I miss my school, I miss the camaraderie of my teacher friends and fabulous secretaries, but most of all, I miss the kids. Seeing a student really hit me right in the emotional gut, I’m not where I am supposed to be right now. I am supposed to be in the classroom, with all the ups and downs of teaching, it is all about connecting with kids, and helping them learn and grow and become more mature. And I’m missing it. Yea, I know I’ll get there, but today I’m missing it.

There’s lots of other things I miss too, like having free time. I’m sick of taking every available moment to study my treatments options, filling out medical paperwork, researching medical facilities and doctors, etc. I know that it is shallow and only temporary, but I miss my hair. In air conditioned rooms, my head is cold. With cooler temps finding their way to Ohio, my head is cold. I miss planning anything. I always have to think, well, if I am OK on that day I can….. I hate having to live one day at a time. People who tell me to just live one day at a time don’t actually have to live their life that way. It is easy to say, very hard to do. I miss taking “feeling good” for granted. I didn’t realize how most of my life I always felt good. Now, when I feel good, I really notice it and appreciate it so much.

Sigh. I’ll quit whining now. At least for today, I get to go hang out with the Unitarians. And that is something to be grateful for.